Cleft Surgical Services Outcomes Paper

Cleft Lip and Palate Surgery in Scotland: Outcomes
In the run up the current consultation exercise the issue was raised of differential outcomes
for speech between the Edinburgh and Glasgow specialist cleft lip and palate surgical
services. In considering those concerns National Specialist Services Committee agreed that
the consultation should include material on outcomes and the purpose of this paper is to
provide that information. It is important to set this material in context. The process in which it
has been collected is a long standing one established to drive improvement in clinical
services. Until the current service change proposals were proposed no issues had been
raised about outcomes in Scottish services by any of the number of clinicians from across
Scotland who had participated in the process of collecting and reviewing this data. Further
review of the audit information indicates that surgical services in Scotland are safe and in
line with the rest of the UK.
Speech outcome data have for a number of years been collected and reported in a
systematic way by individual cleft centres across the United Kingdom. More recently these
data have been collected centrally by the CRANE database for the English, Welsh and
Northern Ireland Cleft services. By pooling all the data it is now possible to compare the raw,
un risk-stratified outcomes for each centre.
Speech outcome data for the Scottish Centres from the period in question have been
provided by the individual boards and are shown plotted on graphs provided by the CRANE
Database. The plots include pooled 2007 and 2008 data as well as separate plots for the
most recently available 2009 data.
Review of the data, graphs below, enables confirmation that both Edinburgh and Glasgow
speech outcomes are:‐
‐
within the normal range of those achieved across the rest of UK cleft services
have improved over the period for which data is available;
It is also important to set this data in context. A number of factors other than surgical skill are
important:‐
Over the period in question it has been shown that there are statistically
significant differences in the social and economic deprivation (SIMD) scores for
the patients served by the Glasgow surgical service versus those served by the
Edinburgh surgical services. While the impact of social deprivation on cleft
outcomes is not fully understood, discussions relating to the introduction of some
degree of “risk stratification” in the comparison on cleft units outcomes (including
social deprivation) is now a subject of debate within the UK cleft community.
‐
Speech therapy resource is also important to speech outcomes and there is
differential access to speech therapy between the Edinburgh and Glasgow
services.
‐
Speech outcomes are only obtainable some 5 to 6 years following primary cleft
repair and as such it should be noted that these data only provide a historic
reflection of outcomes for the centres contributing. Furthermore given the small
number of children born in Scotland each year with an oro-nasal cleft it may be
more valuable to watch trends over multiple years than look at simple, single-year
raw data.
Edinburgh 09
Edinburgh 07-08
Glasgow 09
Glasgow 07-08
%
%
100
90
80
70
60
50
40
30
20
10
0
Speech Standard 2: Speech Difficulties
Edinburgh 09
Edinburgh 07-08
Glasgow 09
Glasgow 07-08
20 25 30 35 40 45 50 55 60 65 70 75 80 85 90 95 100 105
Number of cases with CAPS-A scores
Region I Unit
ul99.8%
%
ll95 _s2%
ll99.8%
National Average 2004-06
%
ul95 _s2%
Edinburgh 09
Edinburgh 07-08
Glasgow 09
Glasgow 07-08
%
%
Other Surgical Outcomes
The information below comments on a range of other surgical outcomes, again confirming
that surgical outcomes in both Edinburgh and Glasgow are within norms for the UK.
The information is an extract of data provided to Cleft Care Scotland National Managed
Clinical Network by professionals working in the network for the purpose of national audit. It
is usually presented as Scotland-wide data.
Audit of the maxillary growth pattern in 5 year old children born with a unilateral cleft
lip and palate (UCLP) and bilateral cleft lip and palate (BCLP)
It has long been suggested that patients with treated clefts have restricted growth of the
maxillary bone complex and it is believed that the extent of scarring following surgical repair
of clefts may contribute to this restriction in growth. Multiple methods of scoring maxillary
growth using dental occlusion have been developed.
The assessment in cleft is a compromise as to what is an ideal measure of growth, and what
is practically possible as near as possible to the initial intervention in question so as an
adequately audit the procedure.
The Craniofacial Society of Great Britain has for some time advocated auditing the maxillary
growth patterns in Unilateral cleft lip and palate patients at age 5 years using a validated
scoring system called the 5 year old index. Scoring for BCLP patient is known as the BCLP
Yardstick. The scoring is carried out using dental impressions and or suitable photographic
records. The index outcome is broken down into 5 groups (1&2 good growth result: Green, 3
moderate growth result: Amber, and 4&5 Poor growth results: Red and missing data is
shown in Black).
Edinburgh and Glasgow UCLP Scores:
The data numbers expected for East and West, patient records submitted, absent data and
data not scored is shown in the table below.
Region
East
West
No of children with
UCLP born in
2006, 2007 & 2008
25
32
No of
records
submitted
18
25
No of
records not
submitted
7
7
No of records
orthodontist
unable to score
1
3
No of
records
scored
17
22
Average results for the 2000-2008 show that 30% of patient data for the UCLP patients for
Scotland was missing for this audit and this remained unchanged with the 2008 audit period.
Audit results for 57 children born with a UCLP in Scotland during 2006, 2007 and 2008 are
shown below along with Scotland-wide results against the rest of the UK. 39 models/photos
were available for independent scoring by 2 consultant orthodontists from Cleft Units in
England. 31% of records were missing for a number of reasons including failed
appointments, data not being provided to the Network Office for collation or the orthodontist
being unable to score the data provided. 2009 data has recently been collated by the
Network and submitted for scoring.
UCLP Scotland-wide data:
Collated 5 year index results for Scotland in relation to the rest of the UK & E for children
born between 2000 and 2008 are provided below.
2 0 0 0 -2 0 0 8 S C O T LA N D v U K & E
N
U K 0 0 -0 8
1567
SCOT
139
0%
20%
G p I & II
40%
G p III
60%
G p IV & V
80%
100%
M is s in g
The most recent Scotland-wide audit results for 2008 births are shown below.
2008 UK & E v SCOTLAND
UK & E
N
204
SCOT
26
0%
20%
40%
Gp I & II
Gp III
60%
80%
Gp IV & V
Missing
100%
Edinburgh and Glasgow BCLP Scores:
The Cleft Care Scotland National Managed Clinical Network has recently started to collate 5
year old BCLP data for scoring using the BCLP yardstick. However numbers are small
related to the percentage of children born within Scotland with BCLP. 12 models/photos
were available for independent scoring out-with Scotland. 2009 data has recently been
collated by the Network and submitted for scoring.
The data numbers expected for East and West, patient records, submitted and absent data
is shown in the table below.
Region
East
West
No of children
with BCLP born in
2007 & 2008
13
9
No of records
submitted
No of records
not submitted
7
8
6
1
No of records
orthodontist
unable to score
3
0
No of records
scored
4
8
5 Year BCLP Yardstick Scores for children born with BCLP in 2007 & 2008 (n=22)
10
8
6
4
2006‐2008 Edinburgh (n=13)
2
2006‐2008 Glasgow (n=9)
0
Gp I&II (Green outcome)
Gp III (Amber outcome)
Gp IV&V Missing/ (Red not scored
outcome)
BCLP Scotland-wide data:
Collated 5 year results for Scotland in relation to the rest of the UK & E for children born
between 2005 and 2008 are provided below.
2 Outcome of Maxillary Growth in 5-year BCLP 2005-2008
N
182
UK & IR
20
23
10
SCOT
23
0%
20%
40%
Gp I & II
60%
Gp III
80%
Gp IV & V
100%
Audit of the alveolar bone graft results in of children who have undergone alveolar
bone grafting
Results are measured on a 4 point scale known as the Kindelan ‘bone-fill’ scale. Kindelan 1
and 2 results indicate a good result. Bone-grafting should ideally be undertaken before
eruption of the permanent canine teeth and in some cases lateral incisors to benefit from the
tooth erupting through the grafted site and to allow remodelling and consolidation of the
bone in the cleft site as it erupts. It is important for outcome to consider grafting before the
canine erupts into the cleft site hence our standard that grafts should be completed prior to
12 years of age. The data numbers expected for east and west, patient records, submitted
and absent data is shown in the table below. Scoring was undertaken by two Consultant
Orthodontists based in Scotland.
Region
No of children
on ABG list
No of records
submitted
No of records
not submitted
East
West
33
36
25
34
8
0
Edinburgh and Glasgow Kindelan Scores:
No of records
orthodontist unable
to score
0
0
No of records
scored
25
34